Dear Friends,
Thank you for checking this blog. I am always amazed at who takes the time to read this blog, as I’m sure everyone has busy, preoocupied lives.
I just returned from a wonderful 5 day trip to Denver, Colorado for a Byrnes family reunion. My parents-in-law came out with from Florida, and Andrew’s sister and her family came out from North Carolina. We all stayed at my mother-in-law’s friends’ gorgeous, spacious mountain home in Evergreen, dubbed “Bright Outlook”, just outside of Denver. The highlight of the trip was witnessing the amazement of our four year old niece Reese, who had never visited the snowy mountains before.
Because this was not a Stenzel family reunion, there were no long snowshoe trips, cross country ski tours or ‘death hikes’ in the snow. Instead, we had long meals of warm conversation, playtime with our niece, had storytime, and fun trivia games with the grown-ups. There was comfort among family whom I’ve known for 16 years, so nothing is hidden anymore- for better or worse! I felt so privileged to be part of another family whose style and culture was so different from my own, while all growing older. And to see how a child changes dynamics and draws joyful attention. I quietly examined the roles and habits of each member, respecting the way each person was, and respecting that I was merely an observer in these patterns. My in-laws allow me to understand my husband even more. My sister and brother in-laws are such incredibly talented natural parents. They are firm and serious with limit-setting, so our niece is a very well – behaved sweet girl.
The best part of the week was the short outings to enjoy Winter Wonderland. I delighted in listening to the squeal of a young child trying to walk through deep snow, falling and squirming in the powder with amazement. It’s amazing when you’re not pushing your Stenzel body to the limit with a long distance trek, how much fun we can still have in the snow.
Everything seemed to be in slow motion with our niece, where we had to slow down and take the time to notice details. What a great reminder of how to live! Even putting on the snowsuit was something new. On our first full day in the Rocky Mountains, the family piled into the mini-van and drove to the higher elevations near Echo Mountain, and with sleds in hand we wobbled in our thick dough-boy gear to a small hill leading into a frozen lake. We all got onto sleds and flew down the hill, with some tumbles by the heavy grown-ups. Our niece Reese flew down the hill onto the lake with high speeds, laughing the entire time. I hadn’t been sledding for nearly 30 years, and it felt great to act like a kid again.
The next day we walked around Lake Evergreen, and then went ice-skating over the lake, with the snowy Rockies surrounding us. I took off my boot cast and defied my tendon, and actually skating helped rebuild my ankle muscles. I loved watching Reese gradually let go of her Mom’s hand and walked ever-so-cautiously with her skates over the ice (sliding was a bit advanced!). She wouldn’t let anyone hold her hand or skate near her, because ‘she wanted to do it all by herself’. I could relate to her desire for independence! Andrew and I skated romantically on a real outdoor frozen lake, for the first time in our lives. In some parts of the ice, I could see clearly through, where there were bubbles and cracks, showing the foot-deep ice and darkness below. It was one of the most beautiful things I’ve seen. As I skated around, with the cool air filling my lungs, I felt absolutely fabulous. I thanked God for such ease of breathing. At 9000 feet, I hardly felt the altitude; how could it be this easy to breathe!?! What a miracle; I can never get over it. I want it to last forever; I don’t want to take a moment for granted. And I wish everyone with lung disease could be this lucky.
On our last full day, Tuesday, we enjoyed a once-in-a-lifetime opportunity. The gang, unfortunately without Andrew’s parents, piled into the van and drove to Breckenridge Ski Resort. I was aching to ski, but was thrilled with the chance to go dog-sledding. Reese loved the 8 Siberian huskies who pulled the sled, and we all took turns sitting in the sled or mushing during a 6 mile trail through dense snow. It was exhilirating! The sun was shining through the snow-tipped trees, and the eager dogs barked and yanked on their harnesses with energetic pleasure. Andrew mushed while I sat in the sled, and we hit a good speed- I’d guess 20 miles/hour, and then there was a sudden curve… and we both flew off the sled while the dogs kept running! Luckily that didn’t happen when Reese was a passenger or a musher!! This was a true Rocky Mountain High! What a joyous bonding experience for Andrew, our sister Mary and brother in law Seth and of course Reese!
Now for the serious news. Ana had a drop in her lung function a few weeks ago and wasn’t feeling 100%, so she had a bronchoscopy last week, which discovered acute rejection. So hours after we arrived in Denver, we heard the news, and Ana received three days of outpatient, solumedrol(600 mg each day), or IV corticosteroids, to slap her immune system back into submission. This seems pretty routine for lung transplant recipients, and she was immediately reassured by our posse of supportive friends who’ve ‘been there’. There is little to fear when we’ve had so many friends who have courageously paved the way for us!
Well, when I checked my voicemail upon arriving at SFO, Ana said she was so weak she had to go to the ER, and asked me to take her. She was feverish, weak, nauseous, had terrible stomach pain and ‘couldn’t get out of bed’. Not normal Ana at all. Never mind she had gone to my house to take care of our dog Rupie, only to collapse back at home afterwards. So Andrew and I went straight from the airport to Ana’s home, picked her up and went to the ER. She was given a ton of tests, which mostly came back normal! Her fever reached 39.2 C (over 102ish), not good for a transplant patient… Trent came back from work and stayed with her while I ran my errands and went home. Ultimately, Ana was admitted for more testing, such as an ultrasound of her gut which came back normal (as if!?!?), but she was given broad- spectrum antibiotics.
I let our friends know of her situation and we were hounded with kind words of support. I really want to thank everyone for being so loving. It feels great to not be alone in this journey! But I also don’t want to worry, and sometimes the worry of friends makes me worry more. So actually, Ana and I are pretty calm, recognizing this episode as another one of the ‘road bumps’ of a transplant recipient’s life. We are trying to stay in the moment, and keep our thoughts and feelings from running away, as it’s so easy to think this could be the beginning of the end. We’ve been there, done that, and know that anxiety and fear takes away so much energy that could be used right now to just be.
Three days of total rest/non-distraction have passed for Ana. It is now Sunday, 1/31, and Ana has been inpatient for 5 days. No positive bacterial (C-diff) infections, thank God. She’s feeling alittle stronger, but still has occasional fevers and pain with eating. Now they’ve weaned off the antibiotics and are giving her Gancyclovir for CMV (cytomegalovirus), a very common virus in everybody, which just hangs out inside but flares up during immune suppression(luckily not contagious to most people who already have CMV inside of them, like me). AIDS patients and transplant patients can have severe reactions to CMV. So Ana’s CMV count was in the thousands, meaning it had flared up with the high doses of steroids. This is extremely common in immune-suppressed people, and rather predictable, so I’m rather annoyed that Ana wasn’t given prophylactic (preventative) anti-virals. It’s so easy to scapegoat, and be angry at the medical team. Our trusting side says they are doing their best. And now Ana or I know that the next time we get solumedrol, we need to ask for gancyclovir/valcyte, the two anti-CMV drugs that really work.
I’m pleased Ana’s work is very understanding, because my greatest fear and frustration is Ana feeling compelled to go back to work prematurely. She is strong willed, like me, but this is a great wake up call to just chill out, check out of life’s responsibilities momentarily, as an investment in the long-term, and focus on her full-time job which is: to allow her body to fight the infection/rejection.
Today was Ana’s first day of non-family, non-Stanford Hospital, visitors. Ana, Trent, Andrew and I went on a walk through the halls of Stanford Hospital with our wonderful film crew friends Marc Smolowitz and Nicholas Rossi. Ana even hopped onto her IV pole for a ride- all good signs of energy. She ate some Japanese food leftover from a fabulous post-Japan celebration dinner feast at my home last night with Naomi T and our awesome film crew who are more friends than colleagues. I love you, Matt, Marc, Yasu, Nicholas, and Ashley!!! It was so great to be together, to celebrate our successful Japan tour, and to support each other and share our care and love for one another. This was especially important after the tragic death of one of our film crew’s mother while serving on a mission trip in Haiti during the earthquake. Life is precious and very fragile, for everyone.
So that’s where things have been for the last week. Today is the last day of January. Just six years ago, my donor Xavier had a car accident while reaching for his cell phone while driving. He was fighting for his life just as I was, in 2004. So I thought of him especially hard this week.
I hope you all are well this winter week, driving safely, and breathing as deeply as you can at all altitudes. Thank you for your care, loving words to Ana in emails and phone messages, and for your time to read this long post. Love to you all as we hope together for Ana’s recovery,
Isa
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